InSight 2019/2020 by Penn Memory Center

Features on people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight

INSIGHT IS MADE POSSIBLE BY ARTIS SENIOR LIVING — MEMORY CARE BY DESIGN

2019/2020

Pitch The

For six years, Julius Hayes has said ‘yes’ to annual visits, MRI scans and PET scans. Here’s how PMC hopes to find more participants like Julius. | Page 12

PENN MEMORY CENTER PERELMAN CENTER FOR ADVANCED MEDICINE

215-662-7810

www.pennmemorycenter.org

Letter from the Editor

On people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight.

Dear Reader,

PUBLISHER Jason Karlawish jason.karlawish@uphs.upenn.edu EDITOR Terrence Casey terrence.casey@uphs.upenn.edu 215-898-9979 CONTRIBUTORS Michele W. Berger Janissa Delzo Leah Fein Linnea Langkammer Sharnita Midgett Sally Sapega Shannon Simcox Eric Sucar Danny Yarnall OFFICE 3615 Chestnut Street Philadelphia, PA 19104 www.pennmemorycenter.org www.makingsenseofalzheimers.org

l The Penn Memory Center is a National Institute on Agingdesignated Alzheimer’s Disease Center (ADC), the only one in our tri-state region. l Our staff and programs are dedicated to research in Alzheimer’s disease, age-related cognitive problems, lifelong brain health and improving the well-being of our patients and their families. l Produced by the Penn Memory Center, part of Penn Medicine. We welcome and encourage your questions, comments, suggestions and gifts.

INSIGHT

In this edition, our most comprehensive InSight yet, you’ll learn more about the important roles played by music, composition, and dance in caring for those living with Alzheimer’s disease. You’ll hear the thoughts of both PMC leadership and a research participant on Biogen’s decision to seek FDA approval for a drug previously deemed a failure. You’ll learn that, when your partner tells you that you have memory problems, you should probably trust him or her. And you’ll be introduced to a new concept: the “pre-caregiver.”

Like most other elements of the center, our editorial projects depend on your philanthropic support. Consider making a donation to support this magazine, our weekly newsletter, and other projects (we hear podcasts are a big thing right now). You can learn more on our giving page: www.pennmemorycenter.org/gifts. PMC is a 501(c)3 non-profit organization and contributions are tax-deductible. Sincerely,

Terrence Casey InSight Editor

In this edition:

PRINTING Fort Nassau Graphics http://fortnassaugraphics.net/

Thank you for once again reading InSight magazine, our annual look back at the research, programs and people that make the Penn Memory Center unique.

If you enjoy these stories, subscribe to our weekly email newsletter, sent every Sunday morning. This email takes a deep dive into not just the projects and research of the Penn Memory Center, but also the latest in Alzheimer’s news and research around the globe. Subscribe at pennmemorycenter.org or by emailing PMCInSightWeekly@gmail.com.

3....................................................Creative Expression Through Music 4........................................................Dancin’ to the Music with BalletX 4...........................................................Time Out Respite Care Program 5................................Remembering Alzheimer’s Columnist Bill Lyon 6-7..........................Making Sense of Alzheimer’s: Dementia in Focus 8-9.............................Featured Research at the Penn Memory Center 10.............................................When It’s Time to Turn Over The Keys 11.......................................................Penn Memory Center Staff News 12-13...............................Featured Research Participant: Julius Hayes 14-15.........Aducanumab: The Beginning of the End of Alzheimer’s? 16...........................................................The Dawn of the Pre-Caregiver 17.....................................................The Cost of a Dementia Diagnosis 18.............................A Spouse’s Ability To Identify Cognitive Decline 19........................Combining Passions to Research Music, Cognition 20-21...................Penn Memory Center Scholars’ Featured Research 22-27.................................................Penn Memory Center Supporters

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Creative Expression Through Music, a creative outlet for PMC patients by Michele W. Berger, PennToday

n a small classroom on the fourth floor of the Curtis Institute of Music, Nick DiBerardino leads a group in a humming rendition of “Amazing Grace.” Then undergraduate bassoonist Doron Laznow plays a Mozart military concerto, and DiBerardino asks participants to notice what feelings the music evokes, to embody the beat. “I closed my eyes and absorbed the notes,” says Tempy Small, 65. “It’s good closeyour-eyes kind of music,” agrees DiBerardino, the Curtis Institute Community Artist Fellow. “However much you want to move is great. I usually sway a bit.” Another Curtis undergrad, an oboist named Sarrah Bushara, plays a song, then DiBerardino takes the room on an auditory “ride” that winds through wooded forest and cityscape, with water and bird sounds embodying the former, honking and sirens scoring the latter. The activities end with a minute of silence, then a drum circle during which the group composes and records its own journey in song. The idea behind the program, called “Creative Expression through Music,” is to give Penn Memory Center (PMC) patients with any level of cognitive impairment, from mild decline to Alzheimer’s disease, the chance to interact with Curtis Institute musicians in a comfortable setting. Some iteration of the collaboration has occurred for the past four years, initiated by Curtis’ Mary Javian, but this is

Nick DiBerardino, Curtis Institute Community Artist Fellow

the first classroom-based session that includes Curtis undergrads, Penn graduate students, and PMC patients. “For people with memory impairment, it can be difficult to engage,” says Felicia Greenfield, PMC executive director. “Sometimes people can’t initiate their own activities. Sometimes the activities are too complicated. But when all you have to do is listen to music or be involved in music, that’s something most people can access.” Greenfield presented this broad notion to Penn graduate students Matthew Volpe and Sarah Bujno during the summer of 2018, before they began interning at PMC. They were introduced to DiBerardino, a trained composer, and the trio shaped the four initial classes. “It was about presenting PMC patients with an opportunity to engage in music

Learn more and see the program in action: Visit www.pennmemorycenter.org/ creative-expression-music INSIGHT

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Eric Sucar / Penn Today

in a way that’s enriching and stimulated them to improve their quality of life,” says Volpe, then a second-year master’s student in the School of Social Policy & Practice. Though a small body of literature suggests that music therapy can aid in improving memory deficits, no such research exists regarding composition. In fact, as Bujno and the others began planning the course, they realized there’s very little out there, period, like what they aimed to do. “We’re not trying to fix anyone’s memory but to help them engage with the music,” DiBerardino says. Though it’s a small group in the Curtis classroom, they do all seem connected, to each other and to the music they’ve just heard and created. “What a journey,” DiBerardino says, before ending the session with another hummed “Amazing Grace.” The final notes linger for a moment until they disappear completely, gone but perhaps not forgotten. 2019 / 2020

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Dancin’ to the Music with PMC, BalletX by Sally Sapega, Penn Medicine

Time Out Respite Care program offers ‘time to take care of me’ “When the oxygen masks come down, you have to put on yours first. You have to be able to breathe.”

ctivities learned early in life — like listening to music — remain ingrained in our brain.

“Familiar tunes and lyrics can be recognized across all stages of Alzheimer’s disease,” Ronald Devere, MD, wrote for Practical Neurology. “Listening to familiar music can elicit pleasurable responses such as smiling or moving/ dancing even when communication is lost.” That is the goal for Memory in Motion, a Penn Memory Center (PMC) program that gets participants — both those with cognitive deficits (of many levels) and their caregivers — to not only listen to the musical oldies but move and groove to the tunes as well. Colby Damon, a former professional dancer with BalletX, leads the group. With everyone standing in a circle, Damon starts with easy warm ups — shoulder rolls, raising and lowering arms slowly. “Even if people can’t follow exactly what I’m doing, they naturally stay in the beat,” he said. “Dance gets the heart rate up and the circulation flowing, but the only side effect is having fun,” he continued. “It breaks the isolation, connecting them with music and thereby emotional associations they know and love.” And, even more important, “it gives people a safe space to take risks, encouraging them to do something they haven’t done in a long time,” said Dr. Jason Karlawish, PMC co-director.

— Hazel Souder, PMC Caregiver

by Danny Yarnall

t 78, Hazel Souder doesn’t want to stop living her life, whether that means morning workouts, having lunch with a friend, or attending to appointments throughout the day. And though she’s the primary caregiver for her husband, Louis, who has Alzheimer’s disease, she is still able to take time for herself, thanks to Penn Memory Center’s Time Out program. Time Out, a collaboration between PMC and Temple University, trains students as respite workers and offers an affordable alternative to agency care. Louis’ student worker, Temple University student Jada, spends a few visits per month reading to him, watching movies, playing games, or — Louis’ favorite — taking walks. The program helps Louis maintain a valued level of independence and gives Hazel peace of mind and time to recharge. It also allows her to be more than her husband’s caregiver, she said. “I can lose myself and think of myself as ‘the caretaker,’ but Jada’s help gives me time to take care of me,” Hazel said.

INSIGHT

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Louis wasn’t always receptive to the idea of help, but Jada’s constant presence felt reassuring and made him more receptive to her care, Hazel said. Hazel thinks of Time Out like the inflight safety instructions: “When the oxygen masks come down,” Hazel said, “you have to put on yours first to be able to put it on the person next to you. You have to be able to breathe.” Time Out facilitates meaningful, inhome engagement through intergenerational companionship by connecting older adults with PMC-trained college students. This includes conversation, reading, music, and may also include light meal preparation, laundry, and light grocery shopping. It does not include personal care — such as bathing, dressing, feeding, or toileting — nor administering medications or therapies. While private respite care may cost more than $20 an hour, Time Out care providers will be available for $8.50 an hour, up to 10 hours per week. Penn Memory Center families who would like to sign up or learn more should contact Meg Kalafsky, Time Out Program Coordinator, at (267) 624-4282 or megan.kalafsky@pennmedicine.upenn.edu.

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Karlawish, ‘The man in the white coat’, remembers Alzheimer’s columnist Lyon Following a diagnosis of Alzheimer’s disease at the Penn Memory Center, retired Philadelphia Inquirer columnist Bill Lyon began documenting the ups and downs of his daily life. Lyon died in November 2019 at the age of 81.

by Jason Karlawish

t was the fall of 2017 when I visited Bill Lyon at his home, not as “the man in the white coat,” as I’d been dubbed in his columns, but as an interviewer looking to understand what made him so fearless. Fearless, not just to accept the Alzheimer’s diagnosis I had given him four years earlier, but to shout it out from the tallest tower he could scale. Fearless, not just to live with the loss of his cognitive abilities, but to put them on display to a world that had so treasured his mind for decades. Fearless, to acknowledge his place in the circle of life. In the industry he helped shape, the circle begins again with countless young writing talents. In his family, the circle begins again with his great-grandson, Liam, featured in several columns. One circle, however, remains broken, waiting for the next fearless individual to take on “that sewer rat, Al” as proudly and publicly as Bill took on his fight against his moniker for the disease slowly chipping away at his autonomy. After decades of writing award-winning columns covering Philadelphia’s sports teams, Bill returned to the Inquirer pages from retirement to document his life after being diagnosed with Alzheimer’s disease in the Penn Memory Center clinic. The columns were honest, direct, and — importantly — enjoyable reads that captured the attention of readers INSIGHT

Dr. Jason Karlawish speaks with Bill Lyon in 2017.

Chloe Elmer / Penn Memory Center

across the region and around the globe. The series made for some of the most important recent advancements in Alzheimer’s disease research and care.

are working to develop large-scale messaging campaigns to fight the ageism, and negative emotions that too often follow an Alzheimer’s diagnosis.

Researchers are testing drugs to slow the pace of cognitive decline. This work is going to take some time, but we’ll get there. Alzheimer’s disease will be treatable, but this is a complex disease. An effective treatment likely will help many but not all persons with dementia.

None of this would be necessary if we had more people like Bill Lyon. People living with dementia who are unashamed to describe the challenge of eating peas with a tremor, the sense of relief from turning over finances to a son, the dark humor than can be used to describe one’s incontinence are prize fighters who knock out stigma.

Simply put, like cancer and heart disease, we should expect that Alzheimer’s disease will be treatable, and as well, that we’re going to have to learn how to live with this disease. That starts with learning how to live with — and love — those who have it. My Penn Memory Center colleague Shana Stites, PsyD, has done groundbreaking work on the stigmas of Alzheimer’s disease. She discovered that public stigma often comes from a general lack of understanding about the disease. Researchers and organizations

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Bill made a career as a sportswriter and columnist, but he ended it as the autobiographer of his disease. I asked which was his legacy. He didn’t miss a beat: “That’s easy.” “If you can go your whole life and make one memorable thing,” he told me, “then you’ve had a well-spent life.” _______________________________ Find coverage of the 2017 interview and read the complete Inquirer series at www.pennmemorycenter.org/lyon 2019 / 2020

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Dementia In Focus Editor’s Note: This article was originally published by Making Sense of Alzheimer’s, www.makingsenseofalzheimers.org by Shannon Simcox

Cheney Orr had never planned to chronicle his father’s dementia. In the early stages of decline, Cheney was doing what he always did: taking photos of the things that were happening around him, of his family. “I didn’t start documenting it intentionally. As a photographer, I have my camera with me almost all the time,” he said. As disease progressed, and a project began to form, Cheney used his camera to remove himself from the emotional, raw situation. He could distance himself from difficult moments, behind the camera. INSIGHT

Taking the photos brought the reality of the situation to life for him. He saw his father, his father interacting with his family, his father interacting with the world, and his father’s frontotemporal dementia, through the lens. “Basically, that all changed for me as the disease worsened,” he said. “I would say, at that point, the camera became more of a shield.” Cheney took the photos over several years, from 2014 or 2015 until David, his father, died in 2017. All images were taken on film and developed in Cheney’s home dark room. “In the dark room is where I fell in love with photography, and watching images appear almost like magic,” he said. The photos show moments of nor-

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malcy and happiness. In a few, David is swimming, something the duo did monthly. He was a competitive swimmer in his youth. Though David’s pool etiquette was lacking from time to time, these were moments of enjoyment, ripping through the water in freestyle and butterfly. Cheney explained that, faster than most in the pool, David may bump into people or not wait his turn. In these instances, Cheney would apologize for him and then join David. Another image shows David dancing with a stranger to folk music. Others show David with Cheney’s brother and sister. The series fits in with Cheney’s body of work, which includes images from the Ukraine and also around New York City. His interests lie in long-term documentary and social issues. 2018 / 2019

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“Having this work published and getting the reactions and feedback that I have, and feeling it’s had an effect on just one person — or multiple people — I want to do it again, with other stories and other issues,” he said. The project was not something he shared with his family until it was close to publication. Cheney said he was apprehensive and not sure how they were going to feel, but all of his family members gave their support. At times, he questions whether it is what his dad would have wanted. “My dad was always kind of shy with the camera. Generally, when I would take pictures of him, he’d make silly faces … he was very aware of me taking pictures. As the disease progressed, his awareness of me — he was still aware but, it was a different kind of awareness: quiet acceptance.” But, Cheney said, his dad has always been very supportive of him and his photography. “I would like to think that he would be proud of me.” Subsets of the series have been published on two different sites, and feedback has been ‘intense,” he said. “It was an exhausting amount of feedback. Either friends, friends of friends, people who were friends with my dad and strangers who reached out as well, saying how they were affected and moved.” “The most important thing that those images are able to put into the world: People can see that they are not alone,” Cheney said. “For those who don’t know anything about the disease . . . they can see how devastating it can be.” The photo series of David is not currently on display. Cheney said he has some ideas for the future of the project that are in progress. Follow along for updates on CheneyOrr.com.

Why Enroll in PMC Research? If you want to help speed up the search for Additionally, you can enroll in the PMC Brain treatments for brain diseases, research is the Health Research Registry, a confidential dafastest way to find treatments that work. tabase of volunteers who are at least 60 years old and have normal memory, mild cognitive At PMC, we conduct numerous studies relat- impairment or Alzheimer’s disease. It serves as ed to Alzheimer’s disease, mild cognitive im- our primary research recruitment resource. pairment (MCI), cognitive aging, and lifelong brain health. Some of our currently enrolling To learn more, contact Terrence Casey at studies are detailed below. Eligibility varies for 215-898-9979 or tjcasey@upenn.edu or visit each clinical trial. pennmemorycenter.org/registry.

The Longitudinal Early-Onset Alzheimer’s Disease Study The Longitudinal Early-onset Alzheimer’s Disease Study (LEADS) is a non-treatment national research initiative for adults diagnosed with early-onset cognitive decline and cognitively normal adults. Researchers will collect data from both groups in order to better understand early onset Alzheimer’s disease and other causes of early onset cognitive decline. The study will look at the relationship between clinical, cognitive, imaging, genetic and biomarker tests to better understand early onset cognitive decline. This study is open to individuals age 40 to 64 with a diagnosis of MCI due to Alzheimer’s disease (AD) or probable AD dementia OR individuals age 40 to 64 with normal cognition. Participants must have a reliable study partner who can provide information about the participant’s functioning and accompany the participant to study visits for the duration of the study. Participants must be willing and able to complete an MRI scan, PET scans, and other study procedures. For more information, contact Laura Schankel, MS, at 215-349-8727 or laura.schankel@pennmedicine.upenn.edu INSIGHT

The PEGASUS Study The PEGASUS study is a Phase II clinical trial for older individuals with a diagnosis of probable Alzheimer’s disease (AD) or mild cognitive impairment (MCI) due to AD. The primary objective of this study is to evaluate the safety and tolerability of the study drug, AMX0035. AMX0035 is an investigational drug and is not FDA-approved. The study will measure the effect of the medication on biomarkers (biological markers) associated with neurological damage by assessing cerebrospinal fluid (CSF) from all volunteers. Eligible individuals are age 55 to 89 with a diagnosis of probable AD or MCI. Participants must have a reliable study partner who knows the participant well and sees him or her often, who will attend some study visits, and who will provide information about the participant during the study. Participants must be willing and able to complete all assessments and procedures, including two MRI scans and two lumbar punctures. For more information, contact Allison Weiss at 215-615-3133 or allison.weiss@uphs.upenn.edu

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Time Out Study

The Aging Brain Cohort Study

The Penn Memory Center is conducting a research study to evaluate the effects of Time Out, an intergenerational respite program that matches Penn students with older adults with mild cognitive impairment (MCI) or mild to moderate Alzheimer’s disease (AD). Students provide three hours of companionship/respite care in your home and/or community.

The ABC study collects ongoing individual data from participants across the United States. This data is used by scientists across the nation and the world. It is an invaluable resource for research into Alzheimer’s disease, mild cognitive impairment, and life-long brain health.

The study includes: A questionnaire, a home visit from the study coordinator and a preliminary meeting with the student to ensure a good match, and three hours of respite care per week provided by a trained student, allowing the care partner takes some time to him/herself.

For more information, contact Matthew Ferrara at 215-615-3159 or mferra@pennmedicine.upenn.edu.

There are two randomized study arms (treatment and wait list control). Each arm is 12 weeks long. Those in the treatment group will receive 3 hours of respite care each week for 12 weeks. Those in the control group will wait 12 weeks before receiving care, but will then proceed to the treatment (respite) group for another 12 weeks.

This study is for adults age 65 and older who have a reliable study partner and are willing to have an MRI and either a PET scan or spinal fluid sample. An annual visit includes cognitive testing, neurological exam, blood samples and an interview. You may be asked to participate in other imaging studies, like MRI or PET scans, and other biomarker collection, such as studies of cerebrospinal fluid.

The Medial Temporal Lobe Study

The MTL study seeks to better understand age-related changes in brain structure and function and to compare this with the earliest changes of Alzheimer’s disease. This study will take place over three years. Participants must be ages 21-59, fluent in English, cognitively normal, and able to undergo two MRI sessions over two years. Study procedures include two MRI scans at baseline and at a two-year follow-up and computerized cognitive testing at baseline, one-year follow-up, and two-year follow-up. For more information, contact Melissa Kelley at (215) 662-2672 or melissa.kelley@pennmedicine.upenn.edu

The Alzheimer’s Disease Neuroimaging Initiative 3 Study

This study is available to people with mild cognitive impairment (MCI) or mild to moderate Alzheimer’s disease and their primary care partner.

ADNI3 is a non-treatment, longitudinal, clinical research study that will study subjects for up to five years to determine the best ways to measure disease biomarkers, as well as pathology and functional and cognitive decline if it occurs. Those who are 55-90 who have a diagnosis of MCI or AD may be eligible for the study.

For more information, contact Meg Kalafsky at 267-624-4282 or megan. kalafsky@pennmedicine. upenn.edu.

Participants must be willing to have regular imaging and biomarker collection and must have a reliable study partner.

INSIGHT

For more information, contact Grace Stockbower, MPH, at 215-746-3949 or grace.stockbower@pennmedicine.upenn.edu.

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When it’s time to turn over the keys by Sharnita Midgett

river A is a Penn Memory Center (PMC) patient who is referred to the Bryn Mawr Driver Rehab Program and fails the driver evaluation. He had an inkling that it was time to stop driving, and after listening to the concerns of family members, Driver A takes the keys out of his pocket and gives them to his family. “You’re right,” he says. “I’m going to stop driving now.” The family comes to a resolution on next steps. Driver B is also referred to the Bryn Mawr Driver Rehab Program. She fails the test but does not want to stop driving. She is convinced her driving is fine, even after running several red lights, and argues with her family about needing to give up her keys. “I need to drive to take care of my family,” she says. “I don’t want to depend on other people.” Tom Kalina, MS/OTR, CDRS, certified driving rehabilitation specialist for the Bryn Mawr Driver Rehab Program, sees each of these scenarios frequently. He has seen cases where people were lost several states away. Sometimes it can take days to find these drivers. “These same people might come in for the evaluation and drive fairly well,” he said. “But if a person can’t remember where they’re going or the purpose of their trip, it can be disabling.” A person diagnosed with Alzheimer’s disease (AD) or other causes of dementias, as well as their loved ones, have to prepare for the inevitable: at some point, the person will become unable to drive safely. When a person or family members cannot make this judgment for themselves, it is in the clinician’s hand to decide when a person with AD should give up their license. INSIGHT

“For many people, this is one of the most difficult losses. The loss of driving limits your mobility; it limits your independence; it’s something you’ve been doing since you were a teenager,” said PMC Associate Director of Social Work Alison Lynn, MSW, LCSW. But because of the way AD impacts focus, fast decision making and quick reaction time, driving with AD poses a threat to the individual and the public. The most common response Lynn has heard is, “I’ve never had an accident. I’ve never gotten lost. Why are you doing that?”

PMC offers three options for those who are no longer able to drive:

“I try to explain that impairment in driving is not about just getting lost,” she said. “What do you do, not when everything goes according to plan, but when something goes not according to plan?”

Reactions to this news are generally negative, though some patients and families are relieved. People respond well to issues of personal liability, however. Lynn informs patients that if they were to get into an accident with their diagnosis, their insurance may not cover them and they could be sued and experience loss of money and legal trouble.

Signs that a person should stop driving include forgetting how to locate familiar places, making slow or poor decisions in traffic, confusing the brake and gas pedal, and becoming angry or confused while driving, among other signs. Typically, it is up to a caregiver to identify these issues, alert a clinician, and facilitate the transition.

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• • •

give up driving voluntarily, and turn in their license to the DMV take an independent driving evaluation at a private agency take a driving test through the DMV

If one refuses to select one of the three options, clinicians are required by PA state law to disclose the patient’s diagnosis to the DMV.

Kalina takes an emotional approach, telling people that it’s more important to be around than to drive. “You can always hire a driver. You can never hire another mom or dad,” he said.

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New faces at PMC Clinical Fellow

PMC Staff News

Sara Manning, MD

Coordination

Clockwise from top-left: Meg Kalafsky, Melissa Kelley, Sidnei McCrea, Olivia Sykes

Social Work

Clockwise from top-left: Alexandra Acabá Berrocal, Clarise Ballesteros, McEllen Lawrence, Katherine Maddente

Neuropsychology

Form left: Dahlia Kamel, Rachel Mis, MA, Rachel Butler Pagnotti, MS, MA

Communications

From left: Carlos Thomas and Danny Yarnall INSIGHT

After nearly 25 years with the Penn Memory Center —16 as a research coordinator — Jessica Nuñez has said goodbye. She is now a research project manager for Penn Interventional Radiology and Breast Imaging. “Jessica has been an integral member of the team,” said PMC Co-Director David Wolk, MD. “She developed strong bonds with our patients and caregivers, providing comfort and support as they navigated often complicated research studies.”

Researchers at the Penn Memory Center and their collaborators presented their work at the Alzheimer’s Association International Conference (AAIC) held in Los Angeles in July. AAIC is the world’s leading forum for the advancement of dementia science, and the PMC team shared a wide range of research. PMC Co-Director David Wolk, MD, was a plenary speaker at this year’s conference. He discussed new approaches to using magnetic resonance imaging (MRI) to identify brain changes in early stages of neurodegeneration. Dr. Wolk was also one of the presenters of the Alzheimer’s Imaging Consortium, a pre-conference program focusing on methods and uses for different types of brain imaging in dementia and normal aging.

Roy Hamilton, MD, MS, is launching a new research center at the University of Pennsylvania: The Brain Stimulation, Translation, Innovation, and Modulation (brainSTIM) Center. The center, which Dr. Hamilton said has been a goal over the last two decades, will be a hub for developing new treatments that use neuromodulation — direct stimulation of the brain with electrical signals or magnets — to reorder, reorganize, and restore brain function in patients suffering from types of neurologic disorders such as dementia and stroke.

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Laura Wisse, PhD, who was then a post-doctoral fellow at PMC, delivered a plenary session at the Imaging Consortium to discuss lessons learned in neuroimaging for Alzheimer’s disease and other forms of dementia. Research from the Penn Program on Precision Medicine for the Brain (P3MB), led by PMC Co-Director Jason Karlawish, MD, were also featured during the conference. Emily Largent, PhD, JD, RN, gave an oral presentation on the preliminary results of the Study of Knowledge and Reactions to APOE Testing (SOKRATES 2).

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‘I keep my word’

Julius Hayes, a six-year participant in the ABC study, lives up to a 2013 promise to help advance research by Sharnita Midgett

ven in retirement, Julius Hayes keeps himself busy, staying involved in his community and coaching high school baseball. But, year after year, he makes sure his schedule is clear for his annual Aging Brain Cohort (ABC) Study visit. A six-year participant, Hayes said he’s keeping the promise he made in 2013. Hayes, a Philadelphia resident and retired social work supervisor for the city, joined the ABC study after two relatives were diagnosed with dementia and Hayes picked up information about the study at a health fair. A Penn Memory Center staff member told him about “the need for African-Americans to volunteer for research studies for dementia and Alzheimer’s, and I said sure,” he said. In recalling his time in the study, Hayes reflected on the many parts of the study that he enjoyed, including memory testing and interactions with research coordinators. He enjoys when a coordinator reads him a story and asks him to repeat as many elements of the story that he can remember. “The first time, I did okay. As the years have gone by, I kinda know that it’s part of the test and I’m going to do it. I kinda focus a little bit better and each year I think I get better at it,” he recalled. Hayes has had both a 3T and a 7T MRI, which he described as “painless and worthwhile for the study,” as well as PET scans that help researchers detect amyloid and tau. INSIGHT

Danny Yarnall / Penn Memory Center Julius Hayes arrives at the Perelman Center for Advanced Medicine for his annual Aging Brain Cohort (ABC) study visit.

“It’s not uncomfortable. I’m there, I do it, and there’s no after effects or anything,” he said.

much of my time, and whenever [Research Coordinator] Arun Pilania or whoever else calls me up and asks, ‘can I participate, can I help?’ I say, you know, sure.”

Hayes’ friends and family have also been a part of his journey and have supported his participation in research. His wife joins him for his annual visit as his study partner, and his friend had followed his footsteps as a participant in the ABC study. “My friend has early dementia, and his mother had Alzheimer’s,” Hayes said. “I mentioned the study to him, and he’s now participating also.” When asked what keeps him motivated, Hayes said, “I agreed to come back for the yearly visits when I signed up to do the research, and I keep my word.” “It’s not intrusive, it doesn’t take that

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Hayes is actively involved in the community, including coaching his grandson’s high school baseball team, and yet has been an active participant in studies at Penn Memory Center, said Pilania, who works on the Medial Temporal Lobe Study. “His dedication to our research is commendable and serves as an inspiration to others looking to make a difference,” Pilania said. The cause of the dedication? “Without research, we wouldn’t have the advances that we have now.”

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The ABC Study should reflect the city’s population. Here’s what we’re doing to make that happen. by Sharnita Midgett

he Aging Brain Cohort (ABC) study is made up of 382 participants. Mr. Hayes is one of just 17 black men. Meeting our goal of reflecting the diversity of Philadelphia would mean having 84 black men in the study. This is our reality: Though African Americans have a higher risk of developing Alzheimer’s disease, they are largely underrepresented in research, including at the Penn Memory Center and specifically in the ABC Study. Reflecting the general population is the only way to ensure that discoveries are applicable to all. To combat this, the PMC team has been rethinking how we connect with the West Philadelphia community. You can find our staff and clinicians at health fairs, retirement communities, senior centers, and libraries. We’re working with organizations such as Alpha Phi Alpha (APA), the first intercollegiate Greek-letter fraternity established for African-American men, to educate the community on healthy brain aging strategies and research opportunities. PMC also created two new staff positions to focus on diversity in research, mine and that of our new ABC research coordinator, Sidnei McCrea, the first point of contact for those interested in joining the ABC study (more on that on Page 9). INSIGHT

Terrence Casey / Penn Memory Center Above: Frederick Okoye III (left) worked with Penn Memory Center Co-Director Dr. Jason Karlawish (second from left) to organize “Alzheimer’s In Our Community,” which called on local communities to address the growing problem of Alzheimer’s disease in the AfricanAmerican population. The event was co-hosted by Alpha Phi Alpha fraternity. Karen Wheeler (center) shared her personal story as a caregiver. Okoye would go on to become a PMC Minority Scholar in Aging Research. Below: (From left: Clinical Research and Outreach Coordinator Sharnita Midgett, ABC Study coordinator Sidnei McCrea, and Outreach Intern Carlos Thomas.

“I am most excited to meet and work with the members of the evergrowing ABC study cohort,” she said. “I hope to increase visibility of the study amongst underrepresented groups with the aim of increasing representation in the research study.” We’ve made progress, but we need your help. If you would like to join us in our commitment to diversity in re-

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search, please tell your networks about the Brain Health Research Registry (see page 8). This is the easiest way to learn more about the ABC study and other research at PMC. If your community organization is interested in collaborating with me on Brain Health education initiatives like those we’re planning with libraries and senior centers, please don’t hesitate to reach out at any time. ____________________________ Sharnita Midgett is a clinical research coordinator focused on outreach and diversity in research. She can be reached at 215-662-4379 or at sharnita.midgett@pennmedicine. upenn.edu. 2018 / 2019

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Aducanumab: the beginning of the end of Alzheimer’s disease?

by Jason Karlawish

n histories written about Alzheimer’s disease, 2019 will turn up as a landmark year, one in which researchers, clinicians, patients, and their families were whipsawed from crushing despair to giddy optimism. The year unfolded with a string of disappointments. One of the biggest came on March 21 when Boston-based Biogen announced it had pulled the plug on two clinical trials of aducanumab, a promising treatment for individuals with Alzheimer’s disease. The drug had failed a “futility analysis,” meaning it would not be able to achieve its objectives. More bad news came in the weeks and months to follow. An entire class of drugs called BACE inhibitors (pronounced “base” as in baseball) had failed. By the annual international meeting of Alzheimer’s investigators in Los Angeles in July, a pervasive disappointment was enmeshed with embarrassment, heightened by the meeting’s timing on the 50th anniversary of the successful Apollo mission to the moon. A half a century ago, we were able to send someone to the moon, have him walk about, and return home but, despite all our time and effort and money since then, despite all the advances in genomics, proteomics, and other “omics,” despite precision medicine, we haven’t been able to make a dent in this disease. Five months later, at the Clinical Trials in Alzheimer’s Disease (CtAD) conference in December, I and other Alzheimer’s researchers gathered once again in California. This time the mood was giddy. The crowd in the Indigo ballroom at the San Diego Bayfront Hilton behaved more like a gathering INSIGHT

at an awards ceremony than an early morning session at a scientific meeting. There were hugs, laughter, and backslaps.

Why the change? Biogen had somehow flipped the switch on aducanumab. According to its reanalysis of the clinical trial data, aducanumab wasn’t a flop but a success, and the company had decided to ask the FDA to approve aducanumab for the treatment of Alzheimer’s disease. Samantha Budd Haeberlein, who heads late stage clinical development for Alzheimer’s disease at Biogen, spent 45 minutes explaining the complicated events leading up to and following the futility analysis. One key message was that the company had gathered more data in the three months between the start of the futility analysis and the decision to end the trial, but that data hadn’t been part of the analysis. After adding it into the analysis, a different picture emerged: The highest dose of aducanumab just might slow down the cognitive and functional decline caused by Alzheimer’s disease. The much-used phrase “a shot heard ’round the world” comes from the dawn of the American Revolution. It evokes when war first broke out in and around Boston between British troops and American rebels. It sent a message to Britain’s George III and every other monarch and the aristocracies they sustained: Your days are numbered. Biogen’s reinterpretation of its data must still be subjected to FDA and peer review, of course. But if it holds up, I believe that aducanumab will be a shot heard round the world: the beginning of the end of Alzheimer’s disease.

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It won’t end Alzheimer’s because it cures the disease. It doesn’t do that. Aducanumab appears to slow, but does not stop, and certainly does not reverse, patients’ cognitive and functional declines. Given the past disputes over the effects of earlier Alzheimer’s drugs, experts will vigorously debate aducanumab’s benefits. But as long as the benefits are judged to outweigh the risks, aducanumab won’t just treat individuals with Alzheimer’s disease. It will treat our Alzheimer’s culture. When a disease is common, has unknown causes, and no effective treatments, stigma flourishes. The stigmas of Alzheimer’s are intense. They cause people to avoid seeking a diagnosis. They nudge some clinicians to hide the diagnosis. Patients who do learn their diagnosis experience self-stigma. They start to doubt their abilities and worth to others. Friends disappear. Caregivers worry about the future. Stigma causes all kinds of language games. When Ronald Reagan announced his diagnosis of Alzheimer’s disease, he in fact didn’t say he had it. In a handwritten letter to his fellow Americans in 1994, the Great Communicator explained, “I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer’s disease.” The “will be” stands out. It distanced him from his diagnosis. What makes aducanumab so powerful is that it targets one of the pathologies of Alzheimer’s disease, and it does so in persons who are not yet diagnosed with dementia. A bit of history is needed

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to explain this novel way of labeling people with Alzheimer’s disease and why it is so significant. For much of the 20th century, Alzheimer’s disease and dementia were enmeshed. A person had to have dementia to be diagnosed with Alzheimer’s disease. This made sense. You have to be ill to have a disease. Most of the participants in Biogen’s trials, however, did not have dementia. They had what’s called mild cognitive impairment, known widely as MCI. Characterized in 1999 by researchers at the Mayo Clinic, MCI describes changes in individuals’ cognitive abilities that, while noticeable and often annoying, are not disabling. They don’t have dementia, nor do they have normal aging. They’re sort of in between. The reason why the field cared about MCI was that the Mayo team showed it was a risk factor for developing Alzheimer’s disease, like smoking or obesity. The Mayo investigators reported that an individual with MCI had about a 15 percent per year chance of declining from MCI to dementia. One other event is important. In 2002, investigators at the University of Pittsburgh stunned the Alzheimer’s field when they announced the discovery of a radiotracer they called Pittsburgh compound B that could visualize amyloid in the brain of a living person. Before this, the only way to see this characteristic pathology of Alzheimer’s disease was with a brain autopsy. A person with dementia had to die so their caregivers could learn the cause of their dementia. Amyloid imaging ended that Gothic horror story. Which brings me back to Biogen’s triINSIGHT

als. Eighty percent of the participants did not have dementia. They had MCI and PET scans that showed elevated amounts of amyloid in their brains.

A research participant responds to Biogen news Editor’s Note: This is an excerpt from a column published at beingpatient.com.

Some Alzheimer’s experts label this as “prodromal Alzheimer’s disease,” others as “MCI caused by Alzheimer’s disease.” Still others prefer the blunt label “Alzheimer’s disease.” Patients will reject each of these labels. There’s maddening ambiguity around what MCI actually is. It’s like a semi-boneless ham. The term Alzheimer’s disease is unacceptable to individuals with MCI. It is hidebound to dementia, which they do not have. Alzheimer’s is the senility of the 21st century. Patients and their families will give their own names to what they have and why they are getting treated. Perhaps they’ll say they have abnormal amyloid or, in a word, amyloidosis. This renaming is sensible. A drug that targets a pathology targets stigma. It offers some explanation for what’s wrong, the hope of treatment, and a means to rethink and even rename a disease. The statin drugs that reduced cholesterol, first tested in the 1980s, recast heart disease into a test for “good” and “bad” cholesterol. After fluoxetine was baptized Prozac and psychiatrist and author Peter Kramer counselled America to listen to it, antidepressants recast depression. Prozac and its many cousins didn’t just treat American depression and anxiety. Being on Prozac transformed depression into a problem of serotonin balance. A stigmatizing mental illness became a near universal experience. So too shall be the recasting of Alzheimer’s disease. Because aducanumab isn’t just a drug — it’s also an idea. Just like the American Revolution and the shot heard ’round the world.

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Submitted Phil Gutis was a participant in the Biogen clinical trial at the Penn Memory Center. by Phil Gutis

was a Penn Memory Center patient in the controversial Biogen clinical trial that drew so much attention to the Clinical Trials in Alzheimer’s Disease conference. So as I watched Samantha Budd Haeberlein, a Biogen Vice President, spin out reams of data, I was more than a dispassionate observer. In fact, I was perhaps the most personally engaged person in the room. Biogen is already working on paperwork to offer patients who participated in the trials that were summarily canceled in the spring an opportunity to receive aducanumab at the highest doses, while the Food and Drug Administration (FDA) considers its application for approval to market the drug. So starting in the Spring of 2020, I will join thousands of other people around the world in offering up my arm for a monthly infusion of aducanumab. I’ll participate in the new trial with new hope that aducanumab is indeed helping to slow my dementia-related decline. I’ll take pleasure in knowing that I’m helping to make progress against this devastating disease. But if I’m smart, I’ll keep reminding myself that this is still hugely experimental. Hopeful, yes, but still experimental. 2018 / 2019

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The Dawn of the ‘Pre-Caregiver’ by Sharnita Midgett

As biomarkers have taken on a larger role in the diagnosis of Alzheimer’s disease, even before the onset of symptoms such as cognitive decline, researchers have debated how to label these “pre-clinical” patients. The evolution of diagnosis also creates a new role for the loved ones of these patients, those who may someday need to care for a patient living with dementia. This, argued two Penn Memory Center (PMC) researchers, is “the dawn of the pre-caregiver.” In a March 2019 JAMA Neurology article, PMC Co-Director Jason Karlawish, MD, and PMC Scholar Emily Largent, PhD, JD, RN, discussed how the preclinical diagnosis of Alzheimer’s disease, in conjunction with new laws, will lead to earlier engagement of family members in care. “Think about it,” said Dr. Largent. “A patient who is cognitively normal will learn that they have a biomarker and are at increased risk of cognitive decline.” This patient could choose to tell a spouse, children, or close friend of the diagnosis or loved ones may learn of the diagnosis from a clinician. The state of Massachusetts, for example,

requires clinicians to report a diagnosis of Alzheimer’s disease to a family member or legal personal representative of the patient and also to inform that person about care planning, treatments, and support services. The researchers voiced approval for the law, as it supports the goal of improving screening, increasing diagnostic rates, and providing timely education which can provide families with information to better understand, plan for, and address patients’ impairments. If family members are informed of a pre-clinical diagnosis, they will learn not only about their loved one’s risk of

developing dementia but also the likelihood that they will need to assume a caregiving role. This pre-caregiver could help ensure the patient’s well-being and may be asked to take on increasing responsibility as the patient develops symptoms of cognitive or functional impairment. “Being a pre-caregiver will not demand the same time or effort as caregiving for a person with dementia,” the authors wrote. “It will nevertheless be intimate and arduous. As we work to translate the preclinical AD construct into care, the experiences and needs of pre-caregivers must be studied as well.”

Want more stories like this? Subscribe to InSight Weekly for free, and receive the best of PMC every Sunday in your inbox. Subscribe at pennmemorycenter.org or by emailing PMCInSightWeekly@gmail.com. INSIGHT

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ages, which has cost implications for the Medicare program. A full accounting of these additional expenses will help policymakers plan for them in their Medicare budgets. This study examined survival and Medicare expenditures in older adults with and without dementia to estimate dementia’s incremental costs to Medicare in the five years after diagnosis. Patients with dementia had significantly higher expenditures in the 12 months prior to diagnosis than patients without dementia ($17,116 vs. $10,085).

Health & Retirement Survey  Looked at Medicare part A and B expenditures from 19912012, 12 months before and up to 60 months after diagnosis  Estimated 5-year costs for those with a dementia diagnosis and for the same participants in the absence of dementia

The Cost of a Dementia Diagnosis by Danny Yarnall

ESTIMATED 5-YEAR MEDICARE EXPENDITURES (Parts A and B)

uring Medicare’s open-enrollment period in December, older Americans considered the costs and benefits of their options. But outside of normal year-to-year increases in out-of-pocket costs and premiums is a staggering difference for Medicare beneficiaries with dementia. A Health Services Research study used 20 years of Medicare expenditures to estimate that Medicare spends nearly $16,000 more on patients with dementia than other Medicare beneficiaries. This is an “incremental cost” or the extra cost per person specifically due to their dementia. Small, in terms of gross Medicare spending, but an amount that still matters in the long run. The incremental cost accounts for more than one-fifth of all Medicare spending per patient with dementia, a disease that affects 5.8 million Americans. “We need to know how much this costs so we can be prepared,” said Norma B. Coe, PhD, lead author of the study and an associate professor of Medical Eth-

Hoag Levins Norma Coe, PhD, speaks at the 7th Annual Penn Health Policy Retreat. INSIGHT

 Accounted for changes in survival and service use attributable to dementia

PATIENTS WITH DEMENTIA

$71,917

—

SAME PATIENTS WITHOUT DEMENTIA

$56,214

—

INCREMENTAL COST PER PATIENT

$15,704

Leonard Davis Institute IN THE FIVE YEARS AFTER DIAGNOSIS, INCREMENTAL See the complete graphic at www.pennmemorycenter.org/dementia-cost. COSTS FOR PATIENTS WITH DEMENTIA WERE…

ics andCONCENTRATED Health Policy at the Perelman InBYongoing Dr. Coe and her colIN DRIVEN PRIMARILY GREATER work, AFFECTED BY DIFFERENCES YEAR 1 AFTER DIAGNOSIS INTENSITY OF SERVICE USE IN SEX-SPECIFIC SURVIVAL School of Medicine. leagues are looking at the wider finan Half of costs occurred in year 1  Greater use of Part A services  For women, survival time was is and decreased each year until the (including inpatient, cial skilled impact of dementia. unchanged by aThe dementiadisease diagnosis. difference in the presence and nursing, and hospice care) were higher because of The study looked costing another Costs $16,000 in Medicaid absence of a dementia diagnosisat the spending accounted for most of the cost. increased use of services. was nearly zero by year 5. Use of Part B services (outpatient  For$7,000-8,000 men, a dementia diagnosisin outamong 4,000 beneficiaries enrolled expenditures, plus  Average costs were lower in the care) was higher for dementia reduced survival. Greater use of last month of life for dementia patients in year 1, but did not differ services was offset substantially in Medicare Parts A and B, known as of-pocket costs, byondecreased average, over the patients, due to low service use. significantly over five years. survival time. traditional Medicare, diagnosed with same five-year projection. dementia between 1991-2012 from 12 IMPLICATIONS months before through five years after Beyond the cost of hospitalization and  Dementia’s incremental costs to Medicare are significant: the 480,000 patients newly diagnosed with Alzheimer’s in 2017 will add $3.2 billion to Medicare spending in the next five years. their initial dementia diagnosis. medical care are the direct and indirect  Given lower costs in the last month of life, policies to reduce end-of-life costs for dementia patients may not be effective in reducing overall costs of family caregiving. The median Medicare expenditures.  Forty percent of the sample was diagnosed in an inpatient setting, leading to high costs around the time of diagnosis. Future work should examine Dr.whatCoe and her colleagues found daughter caring for her mother would role early detection could play in reducing these costs. the  Subsequent research should explore differences costs$180,000 and how to reduce preventable A service majority of costs comesociodemographic within the firstin dementia need over twoPart years touse.be just two years of diagnosis, and the bulk of as well-off as if she didn’t provide@PENNLDI care, COLONIAL PENN CENTER | 3641 LOCUST WALK | PHILADELPHIA, PA 19104-6218 | LDI.UPENN.EDU | P: 215-898-5611 | F: 215-898-0229 | the spending was for services such as according to another study published inpatient, skilled nursing, and hospice by Dr. Coe. care that fall under Medicare Part A. Medicare Part B, which includes doc- This, she believes, is where the true cost tor’s visits, did not feature as promi- dementia care lies. “There’s so many nently as additional costs on Medicare’s holes in the system…the fact that famledger for patients with dementia. ily caregiving costs $180,000 completely trumps anything we’re talking about A notable fact is that a large portion of with Medicare expenditures,” she said. patients were diagnosed in an inpatient Dr. Coe hopes her work can help patch setting, a hospital stay. “This is prob- the holes that put the cost on families. ably not how the disease is occurring,” Dr. Coe said. This is likely after cogni- Efforts that focus on early diagnosis and tive decline started, relying on a serious breaking the stigma around the disease event to diagnose dementia. can keep older Americans out of the hospital and reduce the need for many Dr. Coe and her colleagues estimated of the Medicare Part A services, where the 480,000 people who received an Al- the brunt of the spending occurs, and zheimer’s diagnosis in 2017 alone will provide them with the care they need add $3.2 billion in Medicare spending sooner. This can cut back on Medicare by 2022. That number is only growing. costs and help families manage the disease more effectively, she said. The rising cost of dementia care will continue to add strain to Medicare as “If you can avoid that ‘crisis situation’ a hundreds of thousands of Americans at the time of diagnosis you can both are diagnosed every year. But this isn’t save money and likely improve patients’ an issue for just Medicare. well-being. It’s a start,” she said.

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The vital role of a spouse in memory care begins with identifying cognitive decline

The Institute on Aging Leah Zuroff (left) presents a poster on her work with Drs. David Wolk and Dawn Mechanic-Hamilton at the Institute on Aging’s Sylvan M. Cohen 2019 Annual Retreat in May 2019. by Leah Fein

our spouse can identify serious memory problems more accurately than you can.

That’s one key takeaway from research by Dawn Mechanic-Hamilton, PhD, ABPP/CN. The Penn Memory Center (PMC) Director of Cognitive Fitness Programs and Neuropsychological Services primarily found that there is not a clear relationship between progressive cognitive decline and people’s concerns about their own memory problems. However, Dr. Mechanic-Hamilton — along with PMC Co-Director David Wolk, MD, and medical student Leah Zuroff — did discover that proxies, like a spouse, were much better at correctly identifying cognitive changes that progressed to mild cognitive impairment or dementia. These results reinforce the importance of having a loved one assist with a memory evaluation. At PMC, patients and research participants are asked to bring a close family member or friend, also called an informant or study partner, to clinic and research visits. INSIGHT

The research team found that patients and their informants agreed most closely when the patient had mild cognitive impairment, but the patient’s report on their cognition still didn’t match their actual cognitive performance. People with no cognitive problems were more likely to worry about their cognition when their study partners thought their cognition was fine. The reverse was true for those diagnosed with Alzheimer’s disease. Dr. Mechanic-Hamilton said that worriers with no cognitive decline did have a slower processing speed, a common age-related change that is not a sign of dementia. They may have perceived their memory was worse, but in reality, their brain was just working slower. Worriers are also more likely to be have symptoms of depression, she said. She added that it’s important to assess for depression in people with memory complaints because it is associated with cognitive problems, particularly with processing speed and executive functioning, like planning and organizing.

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Combining passions to research music, cognition by Danny Yarnall

t’s said the best careers are found when following one’s passion. Rarely does someone get to follow two passions at once. As a postdoctoral fellow at the University of Pennsylvania, Darina Petrovsky, PhD, RN has taken her love and a lifelong passion for music and combined it with a background in nursing science to conduct studies specifically looking at music’s effects on cognition in older adults, including a study published this year in Psychology of Music on musical ability in adults with mild cognitive impairment (MCI). She became involved in music growing up in Russia under the guidance of her grandmother, who was never formally trained and survived World War II in St. Petersburg, then Leningrad, as a child. “She was always working around musicians and had a good sense of what good music is,” Dr. Petrovsky said. “She never had a lot of resources. During World War II, there was a siege. You couldn’t get food in and out, but they still had concerts so they could still enjoy music.” At age 7, she auditioned for an afterschool music program for formal training. She attended the program until she was 14, learning music theory, choir performance, and a variety of instruments. She brought this love with her when she moved to the U.S. at 14 and began exploring other outlets for her talent. She picked up a side gig in high school playing solo piano or accompanying other singers at nursing homes, which brought to her attention the benefits of music in this audience. “After that, I always wanted to work with older adults,” she said. INSIGHT

Terrence Casey / Penn Memory Center Darina Petrovsky leads the PMC choir at the Research Partner Thank You Breakfast.

Dr. Petrovsky played piano all through high school and as the focus of her Bachelor’s in Musical Arts at University of Michigan. She switched tracks in graduate school, earning her Master’s in Nursing at Case Western Reserve University before achieving her PhD in nursing at UPenn in 2017. Most of her work has focused on the intersection of music and brain health and their ability to impact one another. In one study, she interviewed adult choir performers to find out what benefits they believed singing had on them at this stage in their lives. Her recent study with PMC examined where adults with MCI rank their “musical engagement” — how often they listen, play, or go out to see music — and what other musical abilities and interests they had. She wanted to see if there was a correlation between this musical ability and scores on cognitive tests. What she found was somewhat surprising and not in line with the researchers’ hypothesis going into the study.

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While other studies presented some of the benefits music education had on cognitive abilities in older adults, Dr. Petrovsky’s team found that there was not much correlation between her group’s test scores and their musical engagement. “This means two things,” she said, “a) the scale that we used may not be very good or b) the ability to think about your music abilities engages a different part of the brain.” Currently, she is conducting a study on how listening to music at bedtime affects sleep in older adults living with dementia. Dr. Petrovsky has led the PMC Choir for Older Adults, which performed at the Research Partner Thank You Breakfast, and has been a performer at PMC’s monthly Memory Café at Christ Church Neighborhood House in Old City, drawing on her musical education and love of piano to continue meshing her two passions. 2019 / 2020

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Redefining Health by Danny Yarnall

T Considering physician-assisted death when suffering or ‘burdening others’ by Janissa Delzo

f you learned you had an increased risk of developing Alzheimer’s disease, would you ever consider physician-assisted death (PAD)? This is the question asked of participants in a Penn Memory Center (PMC) study published in May in JAMA Neurology. About 20 percent of individuals who had learned they had elevated beta-amyloid, an Alzheimer’s-linked protein, reported that they would consider PAD “if they became cognitively impaired, were suffering, or were burdening others.” The team, led by PMC scholar Emily Largent, PhD, JD, RN, interviewed 50 individuals from the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s Study for four to 12 weeks after they were informed of elevated beta-amyloid in their brain; some had broached the subject of PAD without prompting by researchers. At a 12-month follow-up, 47 participants were asked about PAD. Under current U.S. laws, persons with dementia are not eligible for PAD. But in nine states and Washington D.C., those who are competent and terminally ill are eligible. INSIGHT

“There are ongoing ethics and policy debates around whether to extend physician-assisted death to patients with neurodegenerative diseases, including Alzheimer’s,” said Dr. Largent. “This was a unique opportunity to gauge interest in PAD in people who recently learned they were at increased risk for dementia.” One participant called for more research into the topic, saying, “you should not have to suffer, and if you do not remember anything and you are just a burden, then that is not any kind of life.” Nearly two-thirds of respondents would not consider physician-assisted death, citing personal, religious, or philosophical objections. Dr. Largent’s team interviewed 30 individuals who did not have elevated beta-amyloid. When asked to consider a hypothetical situation in which they did, their responses regarding PAD or suicide were similar to those with elevated amyloid. PMC Co-Director Jason Karlawish, MD, and Research Program Manager Kristin Harkins, MPH, are coauthors on the paper.

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he very definition of health is up for debate. Penn Memory Center (PMC) Scholar Cara Kiernan Fallon, PhD, MPH and PMC Co-Director Jason Karlawish, MD, argued in two 2018 editorials in favor of an update to the definition of human health made seven decades ago at the World Health Organization’s (WHO) inception. “We thought about the ways current public health initiatives for ‘healthy aging’ reflect a contradiction in terms, and then we turned to the definition of health,” said Dr. Fallon, who is also a Bioethics Fellow at UPenn. The WHO currently describes health as a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” The pair argues as medical science prolongs lifespan and improves quality of life while living with the disease, “healthy” has taken on a new meaning. They recommend the definition be expanded to include noncommunicable disease and special considerations for the elderly, as more than two-thirds of adults 65 or older live with more than two diseases. “We also need to incorporate early and excellent management of disease as part of health,” the authors wrote for STAT. “Managing disease, and not solely its absence, is a means to a healthy life.” Fallon joined PMC in 2018 after earning her PhD in Historical Science from Harvard and previously completing her Master’s of Public Health and undergraduate degree in the History of Science and History of Medicine at Yale. Her background as a historian allows her to analyze the ways history informs the trends and problems of today by combining questions about culture, medicine, and science into her research. 2019 / 2020

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Remembering those who’ve wronged you by Danny Yarnall

ow can you trust someone? Specifically, how do your memories determine how you will interact with someone in the future? This is at the center of new research from Penn Memory Center Scholar Karolina Lempert, PhD, in neuroeconomics, a field she describes as a combination of psychology, neuroscience, and economics. Dr. Lempert created a study with PMC and UPenn’s psychology department in which older adults were shown a photo of a person and told how much of $10 that person shared, either $5 or nothing. Participants were then tested on with whom they would rather interact, based on generosity: the person in the photo or a random draw of people. Logic would dictate that you would happily engage with sharers and spurn those who gave nothing before.

Half of these people split $10 with you evenly. The other half shared nothing. Will you remember which one was which?

While older adults could accurately recognize faces from their photos, the ability to remember a person’s generosity was no better than a coin toss. When they recognized someone but weren’t sure about whether that person shared the money, the study participant would interact with a selfish person 70 percent of the time. This can help explain why seniors fall victim financial scams, which, by some estimates, stole $36.5 billion from seniors’ pockets in 2017.

Dr. Lempert said that she is excited about the future of this research, using data from participants in the Aging Brain Cohort study to design interventions that prevent financial abuse of older adults. “We have a lot of good structural MRI data and amyloid PET scan data. We’re excited to use all those resources to predict who’s more at risk to get taken advantage of,” she said.

Stigma in Dementia: It’s time to talk about it by Sharnita Midgett

espite its central role in defining the experiences of those diagnosed with Alzheimer’s disease, stigma in dementia has been understudied. Penn Memory Center Scholar Shana Stites, PsyD, MA, MS co-authored a paper for Current Psychiatry in which the authors described the impact of stigma on those with dementia, how it has been studied and addressed in the past, and steps to mitigate stigma in the future. Dr. Stites studies how stigma affects persons living with dementia in order to develop ways to stop and prevent its negative consequences. The authors found that internalized INSIGHT

stigma can impact functioning and quality of life for those living with dementia. Internalized stigma is when a person associates a negative social belief with something about themselves. As a result, some people with dementia can worry about revealing their diagnosis. Higher levels of stigma have also been associated with higher anxiety, depression, and behavioral symptoms, as well as lower self-esteem, social support, activity participation, personal control, and physical health. Dr. Stites and co-authors suggested that when healthcare providers talk directly about stigma with patients and their families it can help individuals shake

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loose from the mental weight and false expectations created by stigma. One possible statement: “There is no one way to have Alzheimer’s disease. A person’s experience can differ from what others might experience or expect, and that’s okay.” Media messages have played a role in furthering stereotypes about Alzheimer’s disease by presenting the worst-case scenario, but Dr. Stites pointed out that the media is now helping counter some of this. Public campaigns are being used to counter negative stereotypes. The authors say that raising knowledge of stigma and its multiple, broad-reaching and negative effects on those living with dementia is a necessary step in tackling stigma. 2019 / 2020

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Progress against Alzheimer’s disease depends on your support for our research, programs and patient care.

Inaugural PMC fundraiser greatly exceeds expectations

lzheimer’s disease threatens to become the largest and most costly public health crisis ever faced by our nation. This hard reality makes your tax-deductible gifts and bequests even more vital now to aid our research and nurture our advances. We recognize donors here and on our website at www.pennmemorycenter.org/gifts. Planned giving, matching gift programs, and a range of tax-advantageous structured giving approaches are also available. To learn more about how your support can strengthen and advance the work of the Penn Memory Center, please contact Elizabeth Yannes at (215) 573-4961 or elyannes@upenn.edu. Thank you, Dr. Jason Karlawish and Dr. David Wolk Penn Memory Center Co-Directors

by Terrence Casey

t the Penn Memory Center, we’re leading the fields of Alzheimer’s disease care, research, education and discovery, but we can’t do it without philanthropic support. On a late September evening, more than 100 PMC supporters gathered at The Prime Rib in Center City for an evening of cocktails, raffle prizes and, most importantly, conversations about how gifts advance our research, social support, outreach and training. The first event of its kind for PMC, “A Night Out for Alzheimer’s Disease” was meant to test the waters, and organizers say they were inspired by the results. About $40,000 was raised the night of the event, and a generous gift by the evening’s host, Eli Caplan, brought the total to more than $150,000. “We were blown away by the passion of our supporters at our first fundraising event,” said PMC Executive Director Felicia Greenfield. “We couldn’t have done it without our dedicated advisory committee and our host, Eli Caplan.” The $150,000 will be used for a variety of research, social support, outreach and training efforts, but that amount could fund: • 60 PET scans, which allow researchers to detect the Alzheimer’s disease process even before individuals exhibit symptoms. • 19 editions of this magazine • 50 years of monthly Memory Cafés, providing lectures and entertainment for those living with cognitive impairment and their loved ones

INSIGHT

the penn memory center annual magazine

2019 / 2020

page 22

Penn Memory Center Gift Fund

With your support, the Penn Memory Center is able to accelerate our research, clinical care, and education programs. Anonymous Mx. Celeste Acinapura Mrs. Jamie Albert Mrs. S. T. Anastasi-Aloi Artis Senior Living of Lower Moreland Stewart J. Avart, PhD Mr. & Mrs. Thomas S. Baker Mr. & Mrs. Scott Barsky Mr. R. Bartholomew & Ms. J. Converse Mr. and Mrs. Alfred F. Beers Mrs. Linda Bitetti Ms. Marianne Brooks Mr. Jeffrey Buchakjian Ms. Laura Buchwald Ms. Ruby G. Bullock Mr. & Mrs. William Burns Mr. John S. Buzby, Sr. Mr. John H. Byrne, Jr. Mr. Ronald Calvy Mr. Eli J. Caplan Mr. Perry C. Caplan Mr. Sloan Caplan Mr. & Mrs. Michael T. Carney Mrs. Kathleen Casey Elizabeth M. Cecil, Esquire Mrs. Deloris Chappelle Michael E. Childs, PhD & Nancy M. Childs, PhD Dr. Byung C. Choi Mr. Patrick E. Coggins Mr. & Mrs. Michael J. Cugini Mrs. Gina Daley Ms. Prudence Dalrymple Mrs. Linda Darrach Dr. & Mrs. Lawrence Davis Mr. and Mrs. Robert DeGeorge Deutsche Bank Mr. & Mrs. Samuel Diamond Mr. Joseph H. Donahue & Mrs. Carolina M. Donahue Mr. Harold W. Dorman Mr. Joseph W. Dougherty Ms. Fay S. Durk Mrs. Catherine P. Durkin Ms. Ellen Erhart Mr. Sheldon Faktorow Mr. Segundo Formoso & Ms. Hortensia Formoso Mr. Anthony J. Gallagher Mrs. Barbara Gatta Mr. Joe Gatta Mrs. Vickie Geis Mrs. Mary Ellen Gibbons

Mr. Robert Gingrich & Ms. Eleanor Kiesel Mrs. Marilyn G. Glosserman Mr. Michael J. Glosserman Mr. Edward Gordon Mr. Richard F. Gordon Mr. and Mrs. B. Granor Mr. Robert F. Grieb Mr. Barry L. Grossbach & Mr. Michael D. Hardy Barbara J. Grosz, Ph.D. Ms. Karen Grzywacz Mr. & Mrs. James E. Haling Mr. & Mrs. Carl Hanzelik Anthony C. Harlacher, DMD Mr. Jerome H. Heller & Ms. Rochelle Heller Mrs. Natalie Hess Mr. & Mrs. Thomas W. Hofmann Mr. Steven L. Hostetter Mr. Kenneth Hummel IBM Ms. Rosamond Isenberg Ms. Rosalie Jacobs Ms. Jane F. James Mr. & Mrs. Edward J. Jankowsky Mr. Zeeshan R. Khan Mrs. Renate Kielburger Mr. & Mrs. William Lawrence Mr. Carter R. Leidy, Jr. Mr. & Mrs. Stephen Levick Mr. Ford Jeffrey Levy & Ms. Cindy Shmerler Levy Ms. Kristen E. Levy Mr. Maxwell H. Levy Dr. Louise M. Lisi Ms. Mary Lou Lukens Mrs. Lara Mack Mrs. Jane Macko Mr. and Mrs. Jack G. Mancuso Mrs. Alison Markowitz Mr. Elliot Maser Mrs. Helen McElroy-Cyzio Mr. & Mrs. James McKenna Ms. Mary Ellen McNish Mr. & Mrs. Arthur H. Miller Mrs. Margretta Moorhead Ms. Heather H. Moyer Mr. Ed Nicholson Nicoletti Hockey Complex Dr. James H. Norton & Ms. Julia Norton Mr. Victor Kodzo Ofori Oxford Industries Inc

Mr. James A. Panacek Mr. Ladd Parsons Mr. & Mrs. James W. Pearson, Jr. Dr. & Mrs. Michael Pedicin Mr. and Mrs. Joseph Pensabene Mr. and Mrs. Brent L. Peterson Dr. & Mrs. Steve J. Phillips Ms. Janet Pincus Mr. & Mrs. Richard A. Pinho Mr. & Mrs. Llewellyn G. Pritchard Mr. Eddie Pugliese Mr. Charles M. Quinn Dr. Dianne Esther Reed Rhode Island Hospital Ms. Beverly Rhodes Mr. Brian Bergin Rigney Mr. John M. Rodakis Miss Liza Romano Mrs. JoAnn W. Rooney Mr. John J. Rooney Ms. Frances Park-Li Rothman Mr. John N. Rudolph, Jr. Mr. Norbert Seifert & Ms. Wilma M. Chung Mr. Perry Shah Mr. & Mrs. James A. Shannon, Jr. Mr. & Mrs. William H. Shore Mr. Arthur Siegel Ms. Hazel Souder The Honorable Walter Stapleton Mrs. Theresa Strohmeyer Mrs. Betty Franks Sykes Ms. Norma L. Terrell Mr. & Mrs. Stephen Trachtenberg Mrs. Janice E. Troncelliti Ms. Lisa Troncelliti Mr. & Mrs. Joseph Trotto Mr. & Mrs. Edward E. Ulmer Vanguard Group Foundation Mr. & Mrs. Carl S. Viola Mr. Stanley L. Walicki Mr. and Mrs. F. J. Wallace Mr. & Mrs. Robert F. Wallace Ms. Ashley Wayne Mrs. Rudolf M. Wertime Mr. Mark Whitlock Ms. Virginia Whittington Mr. Charles Williams & Ms. Josephine Williams Mrs. Joan Wright Ms. Susan Yemin Mr. Rob Yaffe YourCause, LLC

Penn Memory Center Gift Fund

With your support, the Penn Memory Center is able to accelerate our research, clinical care, and education programs. Thank you for honoring the individuals listed below with your gift.

Steve Arnold, MD Dr. Richard G. Fried and Dr. Fern G. Fried

Mary Bryson

Mr. William Bryson

Michael E. Childs, PhD

Mr. & Mrs. James M. Chapman Mr. Christopher Ciompi Ms. Kathlynn Ciompi Karl E. Koenig, PhD Joseph A. Maressa, Esquire Ms. Susan Pomerantz Mr. & Mrs. Michael A. Regina Mr. & Mrs. Gabor J. Rozsa Ms. Joy A. Tussey Mr. William P. Weber Mr. & Mrs. William R. Woodworth Mr. & Mrs. Ralph S. York-Erwin

Nadine Flexer and Stephen Rosengarten

Mr. & Mrs. Bruce Goldenberg Ms. Debra Greenwald Mr. and Mrs. Saul H. Jacobs Mr. & Mrs. Seth Lehr Mr. Todd Rosengarten Ms. Jane Rosenof Mrs. Sue Rosenof Michael D. Roth, DDS Mr. Cyrus Sallee Ms. Jaleh Sallee

Christine Gatta Ms. Lauren S. Yaron

Roy Hamilton, MD Mr. & Mrs. George J. King Ms. Carolyn Pritchett Ms. Paula Pritchett

Jason Karlawish, MD

Mr. & Mrs. James C. Catrickes Mr. Thomas B. Morris, Jr.

Jason Karlawish, MD and John Bruza, MD

Mr. Graeme Clapp & Ms. Anne Wright

Felicia Greenfield, MSW, LCSW

Ms. Patricia J. Ludwig

Ms. Lori Driscoll

Mr. Albert Greenfield III and Ms. Wendy Greenfield

Suz Cornell

Felicia Greenfield, MSW, LCSW and Grace Stockbower, MPH

Diane J. Cornell, Esquire

Mr. Aaron Greenfield Ms. Allison Greenfield

Joseph J. Gatta, Jr.

Julia Moore Converse Ms. Amy Converse

Albert M. Greenfield and Wendy Marcus Greenfield

Dr. Alan R. Cohen and Ms. Michele Langer Langer-Cohen Charitable Fund

Lillian Ludwig Alison Lynn

Ms. Kathie DeCara

Dawn MechanicHamilton, PhD

Mr. & Mrs. John Hrywnak

Thomas B. Morris, Jr. The Prior Family Trust

Peter and Nicole

Your gifts make our efforts possible.

hen contemplating your own memorial arrangements or those of a loved one, please consider an obituary request that, instead of flowers, directs donations for Alzheimer’s research at the Penn Memory Center to: “Trustees of the University of Pennsylvania” (write “ADC-PMC” on the memo line) Elizabeth H. Yannes and mailed to: Penn Medicine Development & Alumni Relations 3535 Market Street, Suite 750 Philadelphia, PA 19104

Alan Seth Brau, MD & Iris Reyes, MD

Ron Ravitz

Mr. Shawn Ravitz

Sanjeev Vaishnavi, MD, PhD and David J. Irwin, MD

Barnstone Foundation Inc Mr. & Mrs. Thomas Cloetingh

David A Wolk, MD

Mr. & Mrs. George Connell

Penn Memory Center Gift Fund

With your support, the Penn Memory Center is able to accelerate our research, clinical care, and education programs. Thank you for remembering the individuals listed below with your gift.

Gloria Amen

Ada Lu English

Doris S. Keating

Barbara Bidwell

Douglas Faulkner

Akram Ali Khan

Ms. Carrie R. Walsh Ms. Susan E. Eberle Mr. & Mrs. William H. Scott Mr. & Mrs. Joseph Romano

Mr. Mark J. Liggett

Mrs. Tamika N. Thomas-Jackson

Ms. Melanie E. Anthony Dr. Henry W. Beck Mrs. Anne E. Carman-Hendel Mr. Robert DiLossi Mr. George R. Faulkner, Jr. Mr. Willard Foote Mr. Russell A. Loverdi Mr. Regius McKenzie Mr. Ed Nicholson

Ralph Caliri

Sally Friedland

Hazel Brissette

Mr. & Mrs. John McNichol

Rebecca Brown

Ms. Linda K. Reed Mr. & Mrs. Carl Schneider

Dr. Beth W. Nalitt & Peter N. Nalitt, Esquire

Janet Caplan

Bettie L. Gassert

Ms. Donna M. Brooks

John Cornell

Diane J. Cornell, Esquire

Jean Crosson

Ms. Elisa Crosson

Eileen Curnane

Mr. & Mrs. John P. Neary

Carolie Davidson Mrs. Joann Daunoras

Daphine Wright Davis Ms. Angela Davis

Marjorie Devlin

Ms. Diane K. Erwin

George Graham Mr. James F. Titus

Judith Phyllis Zander Gross Lee Sanders, MD

Dr. Eli Beller Harmon Mr. & Mrs. Ieuan G. Mahony

James T. Henry, Jr. Mr. & Mrs. Richard Daniel Soltan

Mabel Jackson

Dr. Thomas M. Devlin

Ms. Barbara Jackson

Barry Dietrich

Joseph Kalkbrenner, Sr.

Mrs. Shirley O’Boyle Ms. Caroline B. Cole

Madeline Emmert Ms. Lillian Cosenza

Mr. Daniel Balkin Mrs. Jamie L. Brandle Mr. John C. Giler Ms. Alice Nworah Ms. Catherine Roth

Mr. John J. Keating

Mr. Zeeshan R. Khan

Carolyn Krolik Ms. Elaine Young

Joseph Lubin

Mrs. Dolores A. Lubin

Lillian Ludwig

Mrs. Nancy L. Hathaway Ms. Karen Smith

Mary Regina “Jean” Lynch

Mr. Albert D. Petruzzelli Mr. Michael J. Talarico

Thomas O. Malcolm Mr. Stuart A. Malcolm

Josselyn Craig Marsh Ms. Barbara Quinn

Jack McNichol

Mr. & Mrs. John McNichol The Lisa & John McNichol Charitable Fund

Helen Foster Morgan

Ms. Natalie M. Macy

Gloria Parenti

Mr. & Mrs. Eugene Lera

Linda Ravitz

Mr. Romy L. Braunstein Mr. Harry Kushner

Donald V. Rhoads, MD

Mrs. Marianne S. Rhoads

Dorothy Mae Roberts

Mr. Conlan Crosley

Rose Rudolph

The Barbara and Joseph Philbin Revocable Disciplinary Board of the Supreme Court of Pennsylvania Ms. Rosemary B. Cullen Ms. Barbara B. Denys Mrs. Rita M. Nocito

Eugene Rullo

Ms. Lillian Cosenza

Joanne K. Ruser Ms. Margaret Russell

Carol Schillinger Mr. Dave Cronomiz

Gerard Thomas Peter Thomas, DO

John Tracy

Mrs. Kathy Barr

William Webster

Ms. Ruth Black Ms. Margaret A. Boudin Mr. Barry J. Bram Mrs. Joann Fabian Ms. Donna M. Griff Mrs. Suzanne Haurin Ms. Jean C. Larrimore Ms. Agnes M. McFadden Ms. Sarah E. Monteleone Mr. & Mrs. Shelley Partlon Timothy Weaver Trexler

Nancy Welther

Mr. & Mrs. John McNichol

Dr. David Williams Ms. Amy S. Williams

Caplan Family Caring Difference Fund General Donations Mr. Eli J. Caplan Mr. Perry C. Caplan Mr. Sloan Caplan Mrs. Kathleen Casey Ms. Prudence Dalrymple Ms. Nadine Flexer Mr. Robert Gingrich Ms. Karen Grzywacz Julius H. Caplan Charity Foundation Ms. Eleanor Kiesel Dr. Louise M. Lisi Ms. Mary Ellen McNish Mr. Arthur H. Miller Mrs. Cindy O. Miller Nicoletti Hockey Complex Ms. Beverly Rhodes Ms. Pamela Rosenau Ms. Ashley Wayne

In Memory of Janet Caplan Mr. & Mrs. John J. Aranowicz Mr. and Mrs. Stephen A. Bleyer Mr. & Mrs. Francis J. Dixon Mr. Barry R. Elson Mrs. Judith Elson Mr. Evan Evelev Mrs. Barbara L. Fishbein Mr. Michael D. Fishbein Mr. & Mrs. Robert C. Fletcher, Jr. Ms. Nadine Flexer

Walther Frankel Mr. & Mrs. Walter G. Furer Ms. LauraLee M. Gebhard Mr. Barry Genkin Mrs. Marian B. Genkin Alice L. George, Ph.D. Mrs. Kathleen L. Hetrick Mr. Ronald Hetrick Ms. Jane L. Johnston Johnson Global Solutions LLC Mrs. Pamela Keon Mr. Alan C. Kessler Mrs. Gail Kessler Key Foundation Mr. Philip D. Levinson Ms. Susan A. Lipensky Mrs. Carole Lukoff Mr. Joel S. Lukoff Mrs. Joelle Margolis Mr. Martin Margolis Mr. David S. McLaughlin Ms. Rosemary W. Milgate Ms. Aubre Naughton Mr. & Mrs. Joseph M. Paresky Ms. Virginia A. Phillips Ms. Pamela Rosenau Mr. Benjamin B. Shankroff Mr. & Mrs. Michael E. Shott Dr. & Mrs. Warren I. Taylor Mr. Scott M. Weaver Mr. Ray Wolfson Ms. Elizabeth H. Yannes

ooking for more ongoing and unique giving opportunities at the Penn Memory Center?

Contact Elizabeth Yannes in Penn Medicine Development at 215-573-4961 or at elyannes@upenn.edu. Mrs. Susan

In Memory of Benjamin Fishbein Julius H. Caplan Charity Foundation Mr. Eli J. Caplan Mr. Perry C. Caplan Mr. Sloan Caplan

In Memory of Joseph J. Gatta Jr. Mrs. Denise Adams Mr. & Mrs. Stuart I. Chase Mrs. Kathleen E. Downs Mr. Robert Filipe Ms. Christine M. Gatta Mr. Joe Gatta Mrs. Barbara Haldeman Ms. Diane Kolchins Mrs. Lara Mack Mr. David Rodgers Mr. Arthur Siegel Mrs. Sharon Taraborelli

In Memory of Hildegard Gernsheimer Julius H. Caplan Charity Foundation Mr. Eli J. Caplan Mr. Perry C. Caplan Mr. Sloan Caplan

In Honor of Lou Oschmann Julius H. Caplan Charity Foundation Mr. Eli J. Caplan Mr. Perry C. Caplan Mr. Sloan Caplan

In Memory of Thomas Steiner Ms. Prudence Dalrymple

Dear Reader: A little over ten years ago, my wife was diagnosed at the Penn Memory Center at Penn Medicine with Alzheimer’s disease. Janet lost her battle on Tuesday morning, April 16, 2019, at 76 years of age. Fortunately, as her disease progressed, we had access to the extraordinary team at the Penn Memory Center—the region’s only National Institute on Aging-designated Alzheimer’s Disease Center. The team provides families with personalized counseling, caregiver support classes, access to the country’s leading memory specialists, and the ability to participate in comprehensive research. I urge you to join me in supporting the incredible physicians, social workers, and staff of the Penn Memory Center by making a gift today. Alzheimer’s has no prejudices. It attacks all social, economic, racial, and ethnic populations with a vengeance. It is emotionally and financially devastating, and too many families are not able to provide the level of care needed without incurring significant financial hardship. You have an opportunity to change that right now. The Penn Memory Center needs partners like you. When you make your gift you equip the physicians, researchers, social workers, and staff with the resources to make a difference in the lives of patients and their loved ones. Your contribution will be put to use immediately to alleviate another family’s pain. You could be the one who underwrites the research that leads to a breakthrough, the specialist who offers hope, or the counselor who teaches a spouse how best to care for a loved one. You and I look forward to the day when there is no Alzheimer’s. Until then, I urge you to join me in partnering with Penn’s incredible scientists who work tirelessly on our behalf. Make today the day you help to advance the Penn Memory Center’s efforts. Your gift today will fuel important research and care programs. We all make strides in the fight against Alzheimer’s when we come together for those in need. Thank you for your consideration, and best wishes for a happy and healthy holiday season! Sincerely,

Eli Caplan Resident of Philadelphia, PA P.S. Make your gift today in honor or memory of a loved one. You can make your gift online by visiting www.pennmemorycenter.org/gifts. Your tribute will be displayed in the next issue of InSight unless indicated otherwise.

PENN MEMORY CENTER C/O TERRENCE CASEY 3615 CHESTNUT STREET, ROOM 242 PHILADELPHIA, PA 19104

NON-PROFIT ORG U.S. POSTAGE PAID PERMIT NO. 2563 PHILA, PA. 19104

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